Ken was transplanted at the Robert Wood Johnson Transplant Center in New Brunswick NJ. He hopes his story will help others that are waiting for a transplant.

“I do not know if you remember but I had e-mailed you before about alternatives to transplant.  Well, on Aug. 4, I received a call to come to the hospital for a probable match.  Next morning on Aug. 5, I received my heart transplant. 

“After I received the transplant, they could not close me up because I had too much fluid. They packed my chest and left it open for 3 days.

“Then, I went to the CCU where they took care of me and started to clean out my lungs and helped me wake up occasionally.  After that, I went to the heart unit, which is for people either waiting for a heart or who have just received one.  In that unit, they worked to get me to stay awake more and started physical therapy to help me walk. 

“When I first started with PT, the therapist came into my room and said that if I felt up to it I should try to stand up and take a step.  Well I felt fine but a little weak. I told her that I was at least going to walk out in the hallway.  That didn’t work. I went to get out of bed. I tried to stand up and all of a sudden my legs gave out. I was back in bed and very disgusted. I couldn’t even stand or walk. 

“After that, we did exercises in bed and then in a chair to strengthen my legs.  After over a week of that I could finally walk. I had to use a walker and could only get as far as my doorway, but at least I could walk. 

“During this time, I could remember how you said it is like learning to walk all over again.  While there, I also encountered a few infections and blood clots so they added antibiotics to my medication list and made everything slow down. I was not getting as much therapy.

“When I could walk halfway down the hall, they let me out to go to a rehab center where I started over.  After I got there, I started feeling more and more tired.  The therapists were very good about this and did not push me too much. I had three daily therapies; Occupational therapy, physical therapy and cardio therapy.  After PT on the second day, I went back to my room and fell asleep until 7:30 that night. My PT was at 10:30AM. 

“On the third day, I did some of my therapy. I do not remember how much but I was weak and very tired.  Early that night, the last thing I remember was having to go to the bathroom. Two nurses helped me get to the commode. 

“While sitting there, my wife said I started going into convulsions and passed out. She called for the nurses with both call bells and was yelling for help.  When the nurses arrived, they somehow picked me up, put me back on my bed, and started CPR. 

“The next thing I remember was waking up in the hospital. They asked me if I knew where I was. Not knowing I was, I said JFK.  A while later when I was more alert they explained to me what had happened and what they were doing. 

“Fluid had built up around my heart so that it could not pump effectively. I was to stay in bed until they had everything stabilized. Another week of not being able to get up and walk passed.

“Just like you had said, it was learning how to walk all over again.  They started me with therapy in the hospital and after a week of that, I started complaining that I should be able to go back to Rehab at JFK.

“When I got back to rehab, it was almost like a homecoming. Everyone came to greet me and give their support. They even gave me my same room.  I was still very weak and could hardly get out of bed, but this time they gave me an ultrasound every few days to make sure I was not retaining more fluid around my heart. 

“The second day I was there I knew I was in the right place. Every morning, my OT therapist Michelle would come in around 7 AM and make sure I was awake.  Since I had trouble getting out of bed and since I could not walk well, she would bring me a dishpan with water and body wipes so I could clean myself and do my teeth. If I started getting too tired she would help me and get me dressed. 

“As I progressed, she had me do more and more for myself.  About an hour and a half later, my PT therapist Katrina would come in, get me into a wheelchair and bring me to therapy. There, she had me do all types of leg exercises and always made me walk as far as I could. 

“About 20 minutes after that came cardio rehab.  I met Barry, who was in charge of my progress. He decided what I should do in therapy.  They started me on the NU step where you sit down and put your feet on peddles and your hands on the arms and when you push down you pull up on the handle.  My first time doing this I did okay, but when it was time to get off I could not stand up. Two nurses tried to help me up, but couldn’t. Barry came over, moved my wheel chair to the side of me and to the front. He told me he was going to put his arms around me and I should hang on to him the best that I could. 

“Well that worked. Somehow, he lifted me to my feet, turned a little and guided me right into my chair.

“During this time, my daughter was supposed to get married on Aug 15. Since I was in the hospital and could not go, they postponed the wedding for a month.

“Well, the month went by and I was still in Rehab. I got my hair cut for the first time since the transplant. My wife was going to bring my suit and I thought I was ready to go.  Then two of my doctors came in and said that I should not go. They would not sign me out. They said I was still too weak and would have to have a nurse come with me in an ambulance. It could be dangerous.

“So, instead of going to the wedding, my now son-in-law taught me how to Skype over his iPhone. At least I got to see some of the wedding even if my father had to give away my daughter and give my speech. 

“As I said with the help of my son-in-law and my wife, who was at the wedding with another phone, I could see it.  Also, after the wedding, I received a great treat when my daughter and her new husband came to see me wearing her wedding dress and his tuxedo. Our other daughter also came in her matron of honor dress with her husband and their two children along with my wife. 

“When they were all there, a nurse came in and took pictures of all of us. One of the reasons I wrote this part is to let people know what could happen while you are recovering.

“On Oct. 6, I was finally able to go home. I couldn’t wait. Once I got home, it took me a while to get in the house. By the time I walked up the driveway and up the steps to my house, I was a bit tired.  About 20 minutes later, all my children and grandchildren came over to welcome me home and have dinner with us. 

“On the following Monday, the rehab center called to schedule my outpatient PT and cardio for three times a week. I was scheduled for Monday, Wednesday and Friday, starting at 9:00 am. 

“The therapy was going very good. I was improving every week.  My PT ended the beginning of Dec. but I still had cardio until the second week in Jan.  The last two weeks of rehab, I started getting really tired. I could not keep up with my schedule.  After that, I was still trying to exercise but it was getting harder every day. All I wanted to do was sleep. 

“During this time, I started developing lumps on my back. I went to my primary physician, who sent me to a general surgeon.

“When I was at the surgeon, she lanced the three lumps on my back and sent them to the lab. She prescribed an antibiotic. 

“Two days later, she called and said it was a fungal infection and sent a new Rx to our pharmacy.  Two days after that, we received a call from the transplant team telling us to double the dose of the new antifungal medicine. 

“A few days after that I was so tired, I did not want to get out of bed. My wife called the transplant team.  They told her to bring me in. When I got there they checked me out and said that since I was against going to the hospital, I should come back tomorrow morning.  When I got there, they sent me down stairs for an x-ray and to try to drain fluid from my lungs. That did not go as planned. They took the x-ray but could not drain the fluid because my blood pressure was too low. They sent me back upstairs where they started an IV to try to get more fluid. It was not helping. I was lightheaded. 

“Then, two nurses and the nurse practitioner came in and said that they were sorry but I had to go to the hospital. The nurses wheeled me out to the parking garage where there was transport to the hospital.

“Once in the hospital, they wheeled me to my room where they introduced me to the nurses. Most of remembered me. They gave me an update on my status. 

“After that, the nurse collected all my information and hooked me up to another IV to fight the fungus. The next day the doctors came in and said I had the Aspergillius infection and that it was very hard to treat.

“The next day with all the IVs and pills, I started feeling a little better, but still had no energy.  In the next couple of days, they were able to remove fluid from around my lung and I felt better.

“It almost seemed like I had a revolving door to my room. The nurses and PT people would come every 2 hours, if not more. There was always a doctor. My disease doctor and a nutritionist came by regularly because I could not digest food. I was losing a lot of weight, about 65 lbs. 

“Each doctor had partners that would come in at different times. In late afternoon, a doctor and his partner would come in and explain what they did or did not confirm today. Apparently, they all talked at night or early morning, because the next day the nurse would change some of my medication and then the doctors would come in and explain their approach. 

“One late afternoon, another doctor came in and said he had orders from my doctors to do a procedure. He explained that he was going to put me to sleep and insert tubes and scopes to get biopsies and drain more fluid.

“The next day my doctors came in and asked if I had met the doctor that was going to do the procedure. They also explained to me what was going to happen. After the procedure, they brought me back to my room with a tube still coming out of the side of my chest. By now, I was used to it. The doctor came in and said he had drained the area, taken the biopsies and flushed everything out.

“Through the blood tests and the procedure, they confirmed that the fungus was in my blood and in my right lung and by then my blood count was dropping. My magnesium level was extremely low so they added another IV to my regimen. 

“When they received all the information, they sent me for a cat scan of my brain to make sure I had no nodes. Luckily, it was clean. During this time, I developed more lumps to be lanced. One thing I learned from this was to let the doctors know when you start to feel them. Once they get big, they get infected. Then, they cannot be numbed to lance and they have to go somewhat deep to make sure they have a good opening for the fluid to get out.

“After being in the hospital for another 2 weeks, they let me go home. I got home in February with a pick line so I could hook up my IVs every day. A visiting nurse is scheduled to come every week until the pick line is removed.      

“So far, at least for now I am feeling better and walking more and even trying some light arm exercises and steps.  That is it for now. I just hope I beat the infections and stay out of the hospital for a while.

I have pretty much been confined to quarters since December 27^th. My only escapes have been to see physicians. These appointments have become exhausting and I am now seeing more doctors than at any time before or after the transplant.

Fortunately, a friend has set me up with a local psychologist that has experience dealing with chronic disease patients. Believe me, any other type psychiatrist or psychologist will not meet your needs should you want counsel during your wait or your recovery.

In Tampa, Dr. Kronsnoble a psychologist connected to the transplant program, proved a lifesaver on many occasions. It’s funny because I resisted counseling for a long time before arriving in Tampa.

When things turned bad or when the wait seemed interminable, Doctor K was always there, always on message and understanding of the psychological battles that accompany this form of chronic disease. After a year of looking in Albany, I finally found someone with the experience and who was willing to see patients with Medicare.

It turns out that many psychiatrists in this area have no desire to see Medicare patients, even though I have CDPHP insurance as a backup. I even offered to pay one doctor outside the insurance. That doesn’t seem quite right, does it?

Anyway, I was fortunate enough to meet the right person last week. I have to admit, I was feeling more than a little low. It was so great not to have to walk through all the sticky points and get to the meat in our first session. I admit that there had been some pretty dark thoughts mulling around in my pea brain.

This psychologist got it. We connected in a flash. What a relief! Nobody will ever top Dr. K but we have a contender. And, just in the nick of time.

The doctor got me to thinking about how I had dealt with this physical and emotional stress in the past. Those of you that know me, probably realize that sport, competition and exercise have been mainstays of my lifestyle.

When those activities are absent, my spirits sink and sink fast. I have not been permitted to exercise since December 27^th. After spending the better part of four years in Florida, where it seems sunny every day, I think the sun has been out for three of four hours in Albany. And, it has been brutally cold.

We will not be stationed in Albany next winter.

But, there have been other times, especially when waiting for the transplant, that I have been immobilized and more or less confined to the immediate surroundings. After meeting with the psychologist I came to realize that I had gone away from some pretty basic practices that benefitted me in the past.

There are four big things that have changed since leaving Florida. First, the daily intake of some amount of sun is nil. Second, walking in the pool when it was not possible to walk for distance has not been an option. Thirdly, I have pretty much ceased stretching. Fourthly, my meditation has ceased completely.

As I identify those missing preventive therapies, it makes me sick to my stomach. Everything is better when you see the sun, when you walk as best you can, when you stretch and when you meditate. Yup, these four things require time and commitment, but for me the choice is clear; either wallow in self-pity or get up and do something about it.

I have decided to embrace my excessive stress or “vata derangement,” as the Ayurvedic doctors call it, with lots of stretching and even more meditation. For me, meditation and stretching give me great relief. My body may look like Hell, but it doesn’t feel as bad as it looks. My mind becomes clearer and suddenly sleep becomes possible.

But, there is one more thing. When I was meditating, I found my faith. It may sound corny or even self-serving, but it is true. In fact, not only did I find my faith, or faith found me, I embraced it. Lately, I have been negligent in this area. That stopped after seeing my new shrink. Praise be!  

“Your heart is a pump. It’s a muscular organ about the size of your fist and located slightly left of center in your chest. Your heart is divided into the right and the left side. The division protects oxygen-rich blood from mixing with oxygen-poor blood. Oxygen-poor blood returns to the heart after circulating through your body.

“The right side of the heart, composed of the right atrium and ventricle, collects and pumps blood to the lungs through the pulmonary arteries. The lungs refresh the blood with a new supply of oxygen, making it turn red. Oxygen-rich blood then enters the left side of the heart, composed of the left atrium and ventricle, and is pumped through the aorta to supply tissues throughout the body with oxygen and nutrients.

“Four valves within your heart keep your blood moving the right way. The tricuspid, mitral, pulmonary and aortic valves open only one way and only when pushed on. Each valve opens and closes once per heartbeat — or about once every second while you’re at rest.

“A beating heart contracts and relaxes. Contraction is called systole, and relaxation is called diastole. During systole, your ventricles contract, forcing blood into the vessels going to your lungs and body — much like ketchup being forced out of a squeeze bottle. The right ventricle contracts a little bit before the left ventricle does. Your ventricles then relax during diastole and are filled with blood coming from the upper chambers, the left and right atria. The cycle then starts over again.

“Your heart also has electrical wiring, which keeps it beating. Electrical impulses begin high in the right atrium and travel through specialized pathways to the ventricles, delivering the signal to pump. The conduction system keeps your heart beating in a coordinated and normal rhythm, which in turn keeps blood circulating. The continuous exchange of oxygen-rich blood with oxygen-poor blood is what keeps you alive.”

I could write for days and not express the workings of the heart as well as that. As you can see, the heart is an amazing organ that has many integrated parts. It is easy to see how many things could go wrong.

The heart is exposed to risk through what we call manageable lifestyle choices and causes that are, to a degree, beyond our control. The good news is that the number of uncontrollable causes is shrinking. That puts pressure on each of use to treat our heart responsibly. It is an amazing organ that affects every one of our body systems.

The Causes of Heart Disease

The source for this information is the Mayo Clinic.  Each type of heart disease has its own causes. Some causes are shared but to fully understand the risks, it is best to understand the causes of specific types.

Cardiovascular Disease (Arteries)

Symptoms:

• ·       Buildup of fatty plaques in arteries

• ·       Pressure in arteries makes walls thick and restricts blood flows

Manageable Causes:

• ·       Unhealthy diet
• ·       Lack of exercise
• ·       Being overweight
• ·       Smoking

Heart Arrhythmia

Symptoms

• ·       Abnormal heart rhythms
• ·       Breathing difficulty
• ·       Light-headedness

Contributing Causes

• ·       High blood pressure
• ·       Coronary artery disease
• ·       Diabetes
• ·       Heart defects

Manageable Causes

• ·       Stress
• ·       Smoking
• ·       Drug Abuse
• ·       Excessive use of alcohol
• ·       Certain over the-counter medications
• ·       Certain prescription medications
• ·       Certain herbal remedies
• ·       Dietary supplements

Valvular Heart Disease

Symptoms

• ·       Necessary electrical impulses do not start or travel through the heart.

• ·       Arrhythmia develops

Causes

• ·       Fatal arrhythmia is unlikely to start without outside triggers.
• ·       See causes above.
• ·       Electrical shock
• ·       Repeated use of drugs

Cardiomyopathy

Symptoms

• ·       Thickening or enlarging of heart muscle

There are three types of cardio myopathy

• ·       Dilated cardiomyopathy – the left ventricle, the heart’s chief pumping station, becomes enlarged interfering with the heart’s ability to circulate blood through the body. The most common type of cardiomyopathy.
• ·       Hypertrophic cardiomyopathy – Abnormal growth or thickening of the heart muscle. Again, this strikes the main pumping chamber.
• ·       Restrictive cardiomyopathy – Heart muscle becomes stiff, less elastic. The heart cannot expand properly and fill with necessary blood levels. The least common form of cardiomyopathy.

Causes

• ·       One of the reasons cardiomyopathy is so dangerous is that there are no “exact causes” for this form of heart disease.

Heart Infection

Symptoms

• ·       Pericarditis
• ·       Endocarditis
• ·       Myocarditis
• ·       Bacteria or chemicals reach the heart muscle

Causes

Bacteria in the bloodstream

• ·       Tick-borne bacteria (Lyme disease especially)
• ·       Oral hygiene bacteria

Viruses

• ·       Influenza
• ·       Gastrointestinal
• ·       Mononucleosis
• ·       German measles

Parasites

• ·       Trypanosoma cruzi
• ·       Toxoplasma
• ·       Parasites transmitted by insects – Chagas’ Disease

Medications that cause an allergic or toxic reaction

• ·       Certain antibiotics
• ·       Illegal substances
• ·       Unsterilized needles

Other diseases

• ·       Lupus
• ·       Connective tissue disorders
• ·       Inflammation of blood vessels
• ·       Rare inflammatory conditions

My hope is that you will read this summary and have a better understanding of the causes of this broad-based killing disease. If you have manageable conditions that can cause heart disease, you must make decisions to risk heart disease of change your lifestyle. If you have any questions, contact your physician or cardiologist for answers.

In honor of American Heart Month, it seems a good time to learn more about heart disease. The Mayo Clinic describes heart disease as, “a broad term used to describe a range of diseases that affect your heart. The various diseases that fall under the umbrella of heart disease include diseases of your blood vessels, such as coronary artery disease; heart rhythm problems (arrhythmias); heart infections; and heart defects you’re born with (congenital heart defects).”

“Heart disease” and “cardiovascular disease” are used interchangeably, but the two diseases are different. Cardiovascular disease “refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as infections and conditions that affect your heart’s muscle, valves or beating rhythm, also are considered forms of heart disease.”

The progress that has been made in the area of heart disease and cardiovascular disease is remarkable. As you might suspect, the best defense against these diseases is you and your lifestyle. approximately 1 in 4 Americans die due to heart disease every year.

But, we know more about the disease, likely causes, symptoms, preventive techniques and medications than at any time. Today, we will look at the symptoms of heart disease.

Symptoms of Cardiovascular Disease

Cardiovascular disease is caused by “narrowed blocked or stiffened blood vessels that prevent your heart, brain or other areas of the body from receiving enough blood.”

Symptoms of cardiovascular diseases  include:

• ·       Chest pain (Angina)
• ·       Shortness of breath
• ·       Pain, numbness, weakness in legs and/or arms.

Sufferers of cardiovascular disease often ignore the symptoms until the vessels become so clogged that a heart attack occurs. If you experience the symptoms above, you should report them to your doctor as soon as possible. Herat attacks can be avoided by early detection and early treatment.

The Mayo Clinic divides symptoms of heart disease into five categories:

• ·       Heart disease caused by abnormal heartbeats
• ·       Heart disease caused by heart defects
• ·       Heart disease caused by thick heart muscle (cardiomyopathy)
• ·       Heart disease caused by heart infections
• ·       Heart disease caused by valvular disease

Symptoms for heart disease caused by abnormal heartbeats (Arrhythmia)

Arrhythmia occurs when the heart beats too fast, too slowly or irregularly. Sufferers can experience pain and discomfort during an outbreak of arrhythmia, which typically comes on suddenly. Arrhythmia and symptoms should not be taken lightly.

• ·       Fluttering in chest
• ·       Racing heartbeat
• ·       Slow heartbeat
• ·       Chest pain
• ·       Shortness of breath
• ·       Lightheadedness
• ·       Dizziness
• ·       Fainting (syncope)

Symptoms for heart disease caused by heart defects

Serious congenital heart defects are normally discovered at birth or shortly thereafter. Symptoms include:

• ·       Pale grey or blue skin (blue baby)
• ·       Swelling in legs, abdomen, around the eyes
• ·       Shortness of breath during feedings

Some congenital heart defects are not discovered until later in childhood and even in adulthood. Symptoms are:

• ·       Difficulty breathing during exercise
• ·       Easily tiring during exercise
• ·       Accumulating fluids in heart or lungs
• ·       Swelling of hands, ankles, feet

Symptoms for heart disease caused by thick heart muscle (cardiomyopathy)

Cardiomyopathy is the thickening and stiffening of the heart muscle. In early stages, sufferers may have no symptoms but as the condition worsens look for:

• ·       Breathlessness at any time
• ·       Swelling of legs, ankles, feet
• ·       Abdominal bloating caused by fluid buildup
• ·       Irregular heartbeats, rapid, ,pounding or fluttering
• ·       Dizziness, lightheadedness, fainting

Symptoms for heart disease caused by heart infections

There are three heart infections:

Pericarditis affects the tissue around the heart.

Myocarditis affects the muscular middle layer of the walls of the heart (myocardium).

Endocarditis affects the inner membrane that separates the chambers and calves of the heart (endocardium).

Each infection has slightly different symptoms but look for:

• ·       Fever
• ·       Shortness of breath
• ·       Swelling in legs or abdomen
• ·       Changes in heart rhythm
• ·       Dry or persistent cough
• ·       Skin rashes or spotting

Symptoms for heart disease caused by valvular disease

The heart has four valves: the aortic, mitral, pulmonary, and tricuspid valves. These valves open and close in order to direct blood flow through the heart. Heart valves can be damaged causing:

• ·       Narrowing of vessels (stenosis)
• ·       Leaking (regurgitation or insufficiency)
• ·       Improper closing (Prolapse)

Symptoms include:

• ·       Fatigue
• ·       Shortness of breath – see doctor asap
• ·       Irregular heartbeat
• ·       Swelling in feet or ankles
• ·       Chest pain – see doctor asap
• ·       Fainting – see doctor asap

The key to large event prevention is early detection. You should always discuss your heart and any troubling symptoms with a physician. The worst thing to do is deny or avoid the symptoms. Remember that heart disease is a general term covering a host of serious issues that kill more Americans than any other disease.

Do you part. Know the symptoms, pay attention and do not hesitate to act.

Next Time: How To Avoid Heart Disease

Source: MayoClinic.com

Maybe it was Bates from Dowton Abbey or an interview with a Syrian refugee or a comment by a destitute organic dairy farmer from Vermont, but one of these persons spoke about the power of hope.  Dictionary.com lists five examples of hope:

1. The feeling that what is wanted can be had or that events will turn out for the best: to give up hope.

2. A particular instance of this feeling: the hope of winning.

3. Grounds for this feeling in a particular instance: There is little or no hope of his recovery.

4. A person or thing in which expectations are centered: The medicine was her last hope.

5. Something that is hoped for: Her forgiveness is my constant hope.

After reading these, perhaps it was all three of the characters above that commented about the power of hope. It is hope that makes people achieve unfathomable things. It is absence of hope that saps the will from body and soul.

My heart transplant experience has for the most part been hopeful. I hoped I would get a heart; hoped I would live to know the three grandchildren that I would not have met otherwise, hoped for time to enjoy things, do things, say things, fix things.

Some of that has happened.

But, I must confess that there have been less hopeful times. When on the wait list, there were times that hope diminished. During this endless recovery, there have been many challenges, sometimes overwhelming challenges.

My persona calls for me to be active. It always has.

For me, when active, hope runs high. When inactive, hope is hard to find. There seems a correlation between hopeful and thankful, but thankful seems to be a derivate of hope. When your hopes come true, you are thankful. When your hopes are dashed, you become less thankful.

The challenge for us all is to be hopeful at every turn. In this process of waiting, recovering and moving on to the next challenge, it is hope that must drive the engine.

So, what to do when hope is low?

For me, being part of the Tampa General Transplant community was a hopeful experience. Now, that I am a bit removed from it, my struggles to be hopeful have been much more inconsistent.

I think I am a hopeful person. But, one of the benefits of being in a real transplant community is that you have contact with people who have or are experiencing hope or lack of hope and many of the same challenges you face.

For me, one of the biggest benefits of being in the transplant community was the access to psychological counseling for the specific cause of doubt or frustration. In Tampa, my doubts were met head-on by Dr. Kransnoble on many occasions. I may not have left our sessions in the best shape, but when contemplating the conversations later, she picked me up off the deck and put me back on course… hopefully.

To date, this has not worked for me in Albany. I had two unproductive sessions in Albany with a person who is surely a good counselor for many matters but who is unfamiliar with the challenges of traumatic health issues.

Perhaps it is the weather. Perhaps it has been the many repercussions of two cases of flu this winter. Or, the lack of sun after being in Florida for so long, or the number of various surgeries and pending procedures or the withdrawal from coming off a medicine I have taken for two years, but at this moment, my hope level seems at a low point.

I hate to think that I need medicine to escape this point, but I shall know tomorrow. Even that possible remedy is cause for less hope.

Until yesterday, I had not exercised since December 26. I had only left the house for three doctor’s appointments. My neuropathy and myopathy are running rampant. When I exercised yesterday, it was cause for less hope, not more.

For me, weakening of hope is eased by a few things. Seeing a good counselor, exercise, opening up to loved ones, seeing children and grandchildren and conversations with really special friends are the things that ring my hope chimes.

I have wondered if I should post this draft. I might.

As you forge ahead with your transplant experience, you must do whatever is necessary to keep hope at optimal levels. Some call that being positive, but for me it is more. For me, building hope and staying hopeful is a process, the evolution of determination.

This article may not help you. I hope it does. If it doesn’t ring true, I apologize. You cannot imagine what it has done for me. I will be at the gym tomorrow struggling to improve and increase my level of hope. Thank you for your indulgence.  

Heart disease moves center stage in February, the American Heart Month. The CDC reports that 1 in every 4 fatalities is caused by heart disease.

This month I will post a lot of heart disease data and content related to heart disease. The facts about heart disease are not very pretty but they are real. One fact is certain, you can live a healthy lifestyle and live longer than or you can live a reckless lifestyle and find that you should have lived more prudently.

In my case, I buried my head in the sand, staring at a genetic propensity for heart disease, and not making the right lifestyle choices. Today, I am so squeaky clean that my previous life seems a rapid-fire comedy of errors.

The bottom line is that even when we stare the imposing heart disease data in the face, we remain the best defense against heart disease. And, it is not too late to stop smoking and start eating healthy and exercising. Read this data and address your exercise routine, your diet and your personal consumption habits accordingly.

What was that old television commercial? You can’t fight Mother Nature. You may feel invulnerable. You may have no genetic history of heart disease. But, habits like smoking and over-consumption of alcohol are more dangerous than high levels of sugar, salt or red meat. All these choices diminish your ability to reduce stress.

So, figure it out. How long do you want to live? It really is your choice.

Heart Disease Data

Total Fatalities 2010 – 2,468,435 Americans died in 2010.

Heart Disease Number 1 – Heart disease is the leading cause of death for American men and women, posing an ominous, ever-present threat to you and your loved ones.

Death Rate – 799.5 persons per 100,000 of people living in US die of heart disease every year.

Compared to Cancer – In the US, more than 600,000 Americans died of heart disease every year. 570,000 men and women die of cancer every year.

Progress Report – The number of heart disease-relate deaths decreased by 33 percent from 1999-2009 and this disease remains American’s biggest health challenge. During the same period, fatalities caused by stroke fell 37 percent.

Heart Attack Rate – Approximately 935,000 Americans have a heart attack each year. 610,000 of these happen to people that have never had a heart attack before.

Cost of Heart Disease – In the US, the cost of coronary heart disease is 108.9 billion per year. This cost includes cost of medications, health care services and lost productivity.

Coronary Heart Disease – Coronary heart disease kills more than 385,000 Americans yearly.

Infant Mortality – Heart disease kills 6.15 infants per 1,000 births per year.

Stroke – Stroke kills another 129,476 Americans per year.

Smoking – The gruesome smoking habit includes 21 percent of adult men, 17 percent of adult women and 18 percent of high school students. Knowing what we know today, these people must have a death wish.

Cholesterol – 32 million Americans have a total serum cholesterol rate greater than 24 mg/dl.

Diabetes – The American Heart Association says 20 million adults have physician-diagnosed diabetes.  8 million diabetic adults are undiagnosed. Another 87 million Americans are in pre-diabetes status.

Body Mass Index (BMI) – The US has an obesity problem. It is especially alarming in American youths. 32 percent of the country’s children are overweight. 24 million children (17 percent) are obese. The CDC estimates that 155 American adults are overweight. 68 percent of these persons are obese.

Diet – Diet is the greatest risk of the general population. Less than 1 percent of Americans meet the American Heart Association’s “Ideal Healthy Diet.” No percentage of American children meet the diet’s standards. Reducing sodium, and increasing whole grains remain the biggest hurdles for healthy dieters.

Pretty terrifying stuff isn’t it? Medicine has made tremendous strides. But, the onus of prevention falls upon each person and child. Eat healthy, exercise, teach your children the importance of a healthy lifestyle and you will enjoy them for many, many years. In 2010, the average American life expectancy was 78.7 years. We have come a long way, but we cannot drop the ball in the fight against heart disease.

Sources CDC and American Heart Association

Dr. Beebe greeted congratulated us enthusiastically. He escorted us to his examination room and explained the procedure. He asked Judy how she was about blood draws ad she said “fine.” Then, he looked at me and said, “Good. That means Hiland can lie down on that examination table.” He even fluffed up the pillow. What a guy!  

Another memorable blood draw took place at Columbia Presbyterian. It was a busy day. I was scheduled for a left heart cath and the place was jumping. I think they did more than sixty that day.

We waited quite a while to get into the prep room. When we did, a very unhappy nurse came by to give me a blood draw. She was sighing deeply. I asked if she was okay. She responded, “Not really. I hate blood draws. I’m not good at it. They know that.”

She was right! She was pitiful at it. She huffed and puffed and fumbled the needles. She wore no gloves. She managed to tie the plastic around my upper arm but could not find a sweet spot. I flexed a little and a nice vein stood right up.

She sighed some more. Then, she put the needle in ever so slightly. She stopped. She seemed ready to faint. I was sitting there with this needle dangling out that was not in the vein. I asked her if I could help.

Fortunately, that was the only one of those that happened. I have had a few misfires. After my open heart surgery 12 years ago, one nurse, also with no gloves, got frustrated and ended up drawing blood from my abdomen. That was a little weird.

Anyway, as a heart transplant enrollee, you are going to have hundreds of blood draws before and after your transplant. It may not seem like it, but they all serve a purpose. It turns out that these draws are like a combination blueprint and scorecard for cardiologists. They help identify how your body is responding to your condition.

The most common blood test is the Complete Blood Count (CBC). This test is a standard of the profession. You will have hundreds of CBC draws. The CBC indicates your status in relation to blood cancers, clotting, anemia, infections and immune system disorders. The results of the CBC can lead to proscription medications or can be used to track progress of the listed conditions.

The CBC indicates:

• Red blood cell count
• White blood cell count
• Platelets
• Hemoglobin
• Hematocrit
• Mean corpuscular volume
• An other goodies

You may also have a BMP or Basic Metabolic Panel. This test is usually performed on the plasma. The physicians measure the chemicals in your blood.

The BMP indicates:

• Blood glucose
• Calcium
• Electrolytes
• Kidney function

Other draws can be blood enzyme tests, but one test in particular an reveal whether or not you are at risk for coronary heart disease (CHD). This test is called the lipoprotein panel.

The lipoprotein panel indicates:

• Total cholesterol
• LDL or bad cholesterol level
• HDL or good cholesterol level
• Triglyceride level

Abnormal levels of LDL or HDL and/or elevated levels of triglyceride are strong signs of risk of CHD. Bummer! If you are waiting for a transplant, you are already there, but the cardiologist will continue to use this draw to monitor your cholesterol.

Another relevant test is a test used for blood clotting, a serious dilemma. You may be using Coumadin or Warfarin now. These are the drugs you love to hate. The reason you are using this is because a blood clotting test, which measures the protein in your blood, indicated that you are prone to clotting. Bad news!

Another important test is the CRP, or C-reactive protein test. This test indicates the presence of inflammation somewhere in the body. Inflammation is a main cause of atherosclerosis, the increase of fatty deposits in the arteries.

As a standalone test, the CRP test does not indicate where the inflammation is, but when compiled with data from other blood draws paints a good picture of the source of the inflammation.

In terms of heart disease, the American Heart Association says that CRP levels of less than 1.0 mgs represents a low level risk of heart disease. A level of 1.0 – 3.0 indicates an average level of risk. Above 3.0 suggests a high risk of heart disease.

Cholesterol statin medications are the common prescription for person are above average CRP levels. There are many types of blood draws. The American Heart Association and the Mayo Clinic have excellent descriptions of all the blood tests used for all diseases.

Blood draws serve a definite purpose. They are an essential tool used by cardiologists and other caregivers. If you think you are squeamish about needles, don’t worry. They become matter-of-fact very quickly.

Two of the largest pharmaceutical companies in the world, Bristol-Myers Squibb Company and Pfizer, Inc., have collaborated on a new drug, ELIQUIS. The drug has now been approved by the FDA and the US will join the European Union, Canada and Japan in offering this drug for patients suffering non-valvular atrial fibrillation (NVAF). Unlike Coumadin and Warfarin, ELIQUIS does not cause increased bleeding, but has proven to be an excellent anticoagulant.

ELIQUIS (apixaban) has proven successful in the prevention of ischemic stroke and systemic embolism in patients suffering NVAF. The new drug has been in use in Europe for several months and has proven more effective than other anticoagulants  while not causing excessive bleeding.

ELIQUIS has shown to reduce the risk of stroke, major bleeding and all-cause death.  The drug has proven to be more effective than Warfarin or Coumadin in prevention of systemic embolism and clotting, a risk for wait-list and post heart transplant patients as well as persons with NVAF. 18,201 NVAF patients participated in studies testing ELIQUIS prior to the FDA’s approval.  

Atrial Fibrillation is the most common type cardiac arrhythmia. After persons reach 40 years of age, they have a 25 percent possibility of suffering Atrial Fibrillation, or irregular heartbeat. Persons suffering this condition have an increased amount of risk for stroke. Atrial Fibrillation strokes are the most serious type of stroke. 24 percent of patients dies within 30 days. The likelihood of death within 12 months is 50 percent.

Bristol-Myers Squibb and Pfizer began their innovative collaboration in 2007. The goal was to discover an oral anticoagulant. Both manufacturers have a great deal invested in this collaboration.

The FDA requires a 4-phase process.

Phase 1 – The drug is tested on a small number of healthy patients to make sure it is safe and tolerable dosages as well as identify side effects.      

Phase 2 – In order to determine the drug’s effectiveness, the drug is administered to a large number of patients with a specific disease.

 Phase 3 – The drug is tested upon thousands of patients with the specific disease to monitor effective dosage and observe side effects as well as effectiveness.

Phase 4 – This phase occurs after the drug is approved for use by the FDA and is prescribed. Patients using the drug are observed and evaluated.

According to Pfizer, ELIQUIS (apixaban) is “an oral Factor Xa inhibitor drug that is very effective at reducing the risk of recurrent venous thromboembolism (VT).” VT is the third most common cardiovascular illness. Symptoms of VT include deep vein thromobosis or blood clots in the legs and pulmonary embolism, clotting in the lungs. The drug can be helpful for individuals who have had knee or hip replacements.

In the Phase 3 testing, there were 2,486 participants. 829 of these men and women comprised the placebo group. 84 participants were issued 2.5 mg of apixaban group and 815 participants took 5 mg. per day. All patients had undergone between 6 and 12 months of other anticoagulants prior to their participation in the test.   

The placebo group had a recurrence rate or fatality rate of 11.6 percent. The 2.5 mg. group had a 3.8 percent recurrence or mortality rate while the 5.0 mg. group had a 4.2 percent rate. Patients and physicians agreed there was a noticeably less tendency to bleed, a curse for Coumadin and Warfarin patients. Over an extended period of usage, researchers have concluded that ELIQUIS reduced the risk of arterial thrombic events b 80 percent in males.

Most heart transplant patients have difficulty with Warfarin and Coumadin and the possibility of significant blood loss. Until now, they have been the best treatment for clotting. ELIQUIS may well become the drug of choice for cardiologists, pulmonologists and surgeon concerned about clotting.  

In my case, becoming a professional patient began after a reprimand from my friend Dr. John Bennett. He thought I should be more precise with my medications and that it might not be in my best interest to carry a golf bag in the heat of summer. He was right. Had John not insisted on a defibrillator, I would have died in February, 2003. Thank you!!!

Dr. Harry Odabashian, of Prime Care Physicians in Albany, took over my case when John left to become CEO of CDPHP, our insurance provider. Harry really helped while I was waiting at Columbia Presbyterian and helped coordinate my care with Dr. Donna Mancini at Columbia Presbyterian. Harry was the good cop. Dr. Mancini was the bad cop. Dr. Mancini read me the riot act one day and it made a lasting impression.  

At Tampa General, Dr. Hoffman laid out the law very quickly. She reprimanded me once when I took an extra Lasix pill and another time because I declined to stay at Lee County Hospital after an ER visit. At one point, the good doctor pointed her finger at me and said, “Mr. Doolittle, only one of us has been to Medical School and it isn’t you!”

When we got to the car, the young lady who had driven me there was still shaking from that exchange. She looked at me and said, “You so need another doctor.”

I liked the way Dr. Hoffman set the bar. I had heard a lot about her before I went to Tampa. I believe she is a strong patient’s advocate. And, I liked the fact that she was serious about compliance. I became 100 percent compliant with Dr. Mancini and the Lasix issue sealed the deal with Dr. Hoffman. On another occasion, she hiked on over to the rehabilitation center where I was an inpatient for a few weeks. My heart rate was running high, about 125, but nothing alarming.  The staff refused to let me exercise and put me on a monitor.  I was resigned to playing with tinker toys.  I will always remember Dr. Hofffman storming into the room and ripping the meter off my hand and throwing it on the floor. “Who did this?”  She found out and fixed it. I was immediately allowed to resume exercising. That may have been the day I fell in love with Dr. Hoffman.  I was up and walking laps and doing light resistance training pretty soon afterwards. 

Somewhere between Columbia Pres and Tampa, I became a professional patient. I wanted to succeed and I wanted to know how to do it.

At Columbia, I generated a table and entered all my medications, the strength and the time of intake. I added columns for the seven days of the week and used this list to ensure I was compliant. After every dose, I entered the date on the table.

I also developed a similar table where I entered the date and time of each blood pressure check and each heart rate reading. Before my transplant, when my heart rate hit 90, I was immobile. The only relief came from lying on the floor. Breathing would become difficult. Today, my resting heart rate is between 100 and 110 and everything feels great. What a turnaround!

I logged all my medication lists and vital systems readings into a notebook and would take it to the cardiologist for review.  

As you probably know, going to the transplant clinic before and after transplant does not allow a lot of time for idle chatter. This is a “to do” for professional patients:

• Get your support network engaged. There are a lot of advantages to getting your support network involved in your pursuit. Ask one person to accompany you and take notes during an appointment. He or she will meet the doctor and taste a little of the hospital’s character. Make sure you introduce whoever accompanies you. It never hurts to have another set of ears in the room.
• Before seeing any doctor, know why you are going and make a list of things that need to be addressed. Make sure every question is answered. If you do not understand the answer, say so. Never leave the office or clinic without the answers you need.  The only bad question is the one you do not ask. If you are in clinic, the physician’s assistant is a credible resource. If he or she does not have the answer, they will make sure the doctor knows your concern
• Always take a list of current medications to every doctor’s appointment. This saves time.
• Certain doctor’s will want to see your vital readings so have them ready.
• Interact with the physician’s assistant and with the physician. You are not going to get a lot of sympathy, the clock is ticking so be concise and direct.
• Do not rule out anything until you have heard what the physician is suggesting. Once I had read something about a therapy Dr. Hoffman had discussed with me. When I next saw her, I mentioned my research and stated to ask a few questions. Her response was, “Mr. Doolittle, you see, that’s the problem with patients who read.” I had no response for that.
• Understand your medications.  At first, I used to just take my medicine because it was prescribed. It is safe to say that all the medicines heart transplant patients take have strong side effects. I believe the patient should do their own due diligence. I like the Mayo Clinic website and WebMd.com.
• Professional patients find ways to stay upbeat. In my case, Dr. Kransnoble, a psychologist at Tampa General, really eased my misgivings and misfortunes. You will face periods of anxiety. For me, there was no relief like a walk. When I could not walk, I stretched or meditated or sat in the shade by a pool. Light exercising in water was a great relief. Look, you are sick. Like it or not. Every doctor you see knows that. They can help but you have to do whatever is compliant and necessary to keep your dapper up. Your emotional outlook needs to be elevated and positive. You will go down a dark tunnel before you see the light at the end. But, when you get there, watch out world!
• At the end of each appointment or hospital stay, the doctor will give you a written or typed summary of the appointment. Read it before you leave. If you do not understand the instructions, or think there is an error, do not leave until it is clarified. Save these summaries in a file so that if you need to re-read the instructions, you have a reference.
• Read the transplant manual. I read both the Columbia Presbyterian and Tampa General transplant guides several times. Your support group should read it also. I carried it in my notebook along with the other forms
• Be present on the day and time of your appointment. You have nothing more important than prolonging your life.
• If it happens, call. When you read the transplant guide, there will be rejection warning signs. Some will say to call immediately. If it happens, do not procrastinate. Call.
• Last but not least, listen. According to my bride, that remains a problem for me. If you do not listen to your spouse, you can still make it a point to listen to your physician. If you are unclear, repeat your interpretation to the doctor. It is a good idea to write down any specific instructions… not the ones from your spouse but from the doctor.

At some point in time, your office visits will diminish. The better a patient you are, the faster that day will come.    

Heart Transplant

Today, there are 3,390 patients awaiting heart transplantation in the US.

Today, 1,785 heart transplants have taken place in the US in 2012.

In 2011, 2,322 heart transplants were completed.

A new reader recently messaged regarding her father and his need for heart transplantation. She has been attempting to enroll her 73-year old father in a program for persons aged 70 or more at Duke University. Apparently, Duke is now accepting elderly persons needing a heart transplant and offering these individuals hearts that would not otherwise be used. In other words, subpar or aged hearts that do not meet the transplant center’s protocol.

My first question is that if anyone out there knows of other hospitals engaging in this form of transplantation, please contact me.

Interestingly, on December 5, 2012, the European Source of Cardiology announced that donor hearts previously rejected for transplantation are now being declared viable for transplantation using pharmacological stress echo. This finding was presented at the EUROECHO and other Imaging Modalities 2012 event in Athens. The presenter was the highly regarded Dr. Tonino Bombardini of Pisa, Italy.

EUROECHO and other Imaging Modalities is an annual event that also serves as a meeting of the European Association of Cardiovascular Imaging (EACVI), a registered branch of the European Society of Cardiology.

Hearts Being Wasted

Astonishingly, in Europe 4,500 hearts that are approved for transplantation are not being used every year. Br. Bombardini explained this phenomenon, “”Many of these hearts could be used if we could increase confidence that the transplantation would be successful.”

In Europe the use of hearts from donors aged 50 or more amounts to about 21 percent of heart transplantations on the continent. In the US, most hospitals do not accept hearts aged more than 45.

As in the US, demand in Europe is ever increasing and supply is short. Bombardinin explained the net effect of this unfortunate reality, “”But the lengthening of waiting lists for heart transplantation is a significant healthcare emergency and as a consequence, the criteria for acceptance of donor hearts have been expanded to include donors over the age of 55 years.”    

That is a wide gap between European and US protocols. Bombardini continued, “Despite the expanded criteria, clinicians are hesitant to use hearts from older donors. The use of stress echocardiography to select hearts ‘too good to die’ may be a possible approach to resolving the mismatch between organ supply and demand.”

Between 2005 and 2012, a project, known as the ADONHERS Project, was launched on the continent. The project took 66 heart transplant donors who would not meet the standards of the day because of age. The average age of the donors was 55. After the donors were legally declared dead, due to brain damage, 47 hearts were removed. After testing, physicians and scientists were surprised that 35 of the hearts were acceptable for heart transplantation. For six of the hearts, matches could not be found. However, when the hearts were subjected to cardiac autopsy, there was a complete absence of coronary disease.

The remaining 29 hearts were successfully transplanted. After one month, the recipients and their new hearts were evaluated. Of the 29 grateful recipients, 26 patients had normal heart function and structure. The function was evaluated based on angiography, intravascular ultrasound, hemodynamic tests and ventriculography. Three patients had minor single vessel disease.

After 27 months, 26 patients were alive. Three had died from “general sepsis, neoplasia and recurrent multiple myeloma.” The conclusion of the program was that the age limit could be moved from the current 55 years of age to 65 years of age, a far cry from where US heart transplant centers are positioned.

Bombardini concluded, “Pharmacological stress echo is inexpensive and allows a simultaneous evaluation of inducible ischemia and contractile reserve of the left ventricle – therefore, it is capable of unmasking prognostically meaningful occult coronary artery disease or cardiomyopathy.”

“Pharmacological stress echo is already an established technique that is used to assess and risk stratify patients with known or suspected coronary artery disease. We have shown that it can also be used to identify hearts suitable for transplantation that would previously have been unused. This requires cardiologists with experience of stress echo and ideally a second opinion from a cardiologist in a core lab (using tele-echocardiography), who can give the green light for donation.”

With 2012 seeming to be a disappointing year for heart transplant wait-listers in the US, well below 2011 and 2010 volume, it is encouraging that Duke is seeking to put every heart to use. Hopefully, other centers will follow.